I have a rare tumor in my scrotum.

[Fraser]

Incidental finding while getting an ultrasound for a potential inguinal hernia (which I don't have). The ultrasound report sent to my doctor reads: "A 1cm nodule is seen in keeping with adenomatoid lesion, which is a benign lesion adjacent to the head of epididymis". At first I was glad because it was benign, but after googling it (I know) one thing that I keep seeing is that adenomatoid tumors are difficult to diagnose using imaging alone and that differential diagnosis needs to rule out malignant lesions. The majority of solid state tumors in the epididymis are benign (ballpark 75% benign and 25% malignant) so chances are that it is benign just based off that, but I don't love that I have a rare tumor that is difficult to tell from cancer.

I have been referred to a urologist, but it is likely that it will take as long as 2 months to actually see them. This means that I have two paths ahead of me. One is to absolutely ******* spiral out on this for the next few months, and the other is to try and start to accept some ambiguity into my life and focus on what I can actually change.

 

[mollyfin]

I've been in almost the exact same position! Except, uh, different body parts. Initially I was told I had a uterine fibroid, 1-1000 chance of malignancy. A more detailed scan a few months later came back saying 75% chance it was an irregular fibroid, 25% chance it was a very rare uterine sarcoma. I pretty much left my body at that point! Pure terror. But I had it removed and it was a weird, atypical fibroid.

I think you know which path is ideal! It's probably not going to be easy, but just go one day at a time. The person interpreting your scan went to medical school just to do what they're doing, so they likely have a good idea of what's going on, even if they can't be 100% sure. And they used the phrase "in keeping with," which is the closest thing a radiologist can use to "I'd stake a lawsuit on this." Basically more than 90% confident they know what it is. In comparison, mine said "likely cellular leiomyoma, leiomyosarcoma cannot be ruled out."

I find radiology really interesting, don't mind what a huge nerd I am, lol. If I had the smarts to go to medical school (which I wanted to do once upon a time!) I think it's what I would've gone into.

 

[bigjetplane2]

Can you believe my eyes watered as I read your post.
NO. Not because I’m scared for you or because it’s bad news, not at all.
But because of the news we get and with HA, the worries we have to deal with and how every day is a ******* battle. We’re here with you; We’re your support system.

 

[bigjetplane2]

Everything is going to be ok. Don’t worry.

 

[Fraser]

I've been in almost the exact same position! Except, uh, different body parts. Initially I was told I had a uterine fibroid, 1-1000 chance of malignancy. A more detailed scan a few months later came back saying 75% chance it was an irregular fibroid, 25% chance it was a very rare uterine sarcoma. I pretty much left my body at that point! Pure terror. But I had it removed and it was a weird, atypical fibroid.

I think you know which path is ideal! It's probably not going to be easy, but just go one day at a time. The person interpreting your scan went to medical school just to do what they're doing, so they likely have a good idea of what's going on, even if they can't be 100% sure. And they used the phrase "in keeping with," which is the closest thing a radiologist can use to "I'd stake a lawsuit on this." Basically more than 90% confident they know what it is. In comparison, mine said "likely cellular leiomyoma, leiomyosarcoma cannot be ruled out."

I find radiology really interesting, don't mind what a huge nerd I am, lol. If I had the smarts to go to medical school (which I wanted to do once upon a time!) I think it's what I would've gone into.

Thank you for your response. The radiologist went on to detail numerous other finding and that was all they wrote about the "nodule", and I have to think that if it registered as anything sinister to them they would have emphasized that a bit more. Like, hey, maybe look into this. Also, from what I've read, it seems like when the tumor is in the testicle itself (as opposed to where mine is located) that is when it causes diagnostic issues and it is far more likely for an adenomatoid lesion to be mistaken for cancer than for cancer to be mistaken for an adenomatoid lesion. Lastly, I read a study that suggested that the size of the tumor is relevant for diagnosing malignancies in that area (the epididymis) and that 100% of tumors found in that region that were cancerous were larger than 1.5 cm (mine is 1cm). So while ultrasounds may sometimes be unclear, it sounds like they can, at other times, be more so. I don't like that my body is growing a rare tumor regardless!

Can you believe my eyes watered as I read your post.
NO. Not because I’m scared for you or because it’s bad news, not at all.
But because of the news we get and with HA, the worries we have to deal with and how every day is a ******* battle. We’re here with you; We’re your support system.

Thank you for your support; that means a lot to me. At the moment I am less concerned about cancer and more concerned about my HA spiraling out of control while I wait to speak with a specialist. I need to keep my head down and practice what I've learned so far to make sure that I stay on track. Life is going to be filled with these kind of uncertainties!

 

[bigjetplane2]

Hey how are you?

 

[Fraser]

Hey how are you?

I'm okay, thanks for asking. Still waiting for the urologist to call me. It's likely that I won't be considered a high priority, given that the radiologist thinks it looks benign. I've been avoiding google and just trying to enjoy my summer! I have an unrelated MRI in late Sept for some issues in my butt and pelvis, but I'm not particularly worried about that. Two months is a long time to wait though.

I'd like to see the urologist because I'd like to transition the conversation from "it looks benign" to "I can definitively say that is benign."

 

[Gooze17]

Incidental finding while getting an ultrasound for a potential inguinal hernia (which I don't have). The ultrasound report sent to my doctor reads: "A 1cm nodule is seen in keeping with adenomatoid lesion, which is a benign lesion adjacent to the head of epididymis". At first I was glad because it was benign, but after googling it (I know) one thing that I keep seeing is that adenomatoid tumors are difficult to diagnose using imaging alone and that differential diagnosis needs to rule out malignant lesions. The majority of solid state tumors in the epididymis are benign (ballpark 75% benign and 25% malignant) so chances are that it is benign just based off that, but I don't love that I have a rare tumor that is difficult to tell from cancer.

I have been referred to a urologist, but it is likely that it will take as long as 2 months to actually see them. This means that I have two paths ahead of me. One is to absolutely ******* spiral out on this for the next few months, and the other is to try and start to accept some ambiguity into my life and focus on what I can actually change.

If it helps at all I’ve had a huge swollen lymph node in my neck for about 10 years. It hurts and shrinks when I am sick, instead of swelling. I panicked over it for years, but I have 0 symptoms of cancer. They’ve done an ultrasound on it and said it came back looking like just a swollen lymph node, nothing resembling cancer. I went down the same rabbit hole your going down, can’t be diagnosed without a biopsy, bloodwork won’t show anything unless it’s advanced etc. every person and situation is different but we are far from perfectly assembled beings, little things here and there are just sometimes off or imperfect

 

[Fraser]

If it helps at all I’ve had a huge swollen lymph node in my neck for about 10 years. It hurts and shrinks when I am sick, instead of swelling. I panicked over it for years, but I have 0 symptoms of cancer. They’ve done an ultrasound on it and said it came back looking like just a swollen lymph node, nothing resembling cancer. I went down the same rabbit hole your going down, can’t be diagnosed without a biopsy, bloodwork won’t show anything unless it’s advanced etc. every person and situation is different but we are far from perfectly assembled beings, little things here and there are just sometimes off or imperfect

Yeah, and we have to just accept that. I have to accept that I won't know for sure and I also have to accept that I will one day die.

 

[Gooze17]

Yeah, and we have to just accept that. I have to accept that I won't know for sure and I also have to accept that I will one day die.

And that’s the worst part. I have nights (like tonight) where things feel off and like something is about to happen, it feels like I’m about to end up in the hospital and have a long night with terrible news or die suddenly in a panic. I hate it.

 

[Fraser]

And that’s the worst part. I have nights (like tonight) where things feel off and like something is about to happen, it feels like I’m about to end up in the hospital and have a long night with terrible news or die suddenly in a panic. I hate it.

Yeah, it's a nightmare. Have you developed any coping mechanisms?

Tonight, try giving this a watch:

I'm suggesting this because I find that when someone explains what my HA thought process is in a clinical fashion I feel it loses some of its power over me. Give it a try!

 

[Gooze17]

Oddly enough posts on here really really help. Just reading and replying to them, it’s cathartic for some reason. Past that I haven’t found anything that works other than waiting for the cycle to pass and trying to keep busy, if my body and mind are occupied I don’t think of it as much

 

[Fraser]

Oddly enough posts on here really really help. Just reading and replying to them, it’s cathartic for some reason. Past that I haven’t found anything that works other than waiting for the cycle to pass and trying to keep busy, if my body and mind are occupied I don’t think of it as much

Two things that have a proven record with health anxiety are CBT therapy (and you can do a lot of it without a therapist) and mindful meditation. One thing I find helpful when I want to google symptoms or think on them at length, is to look up material on health anxiety and try to make that the subject of my focus instead.

 

[Gooze17]

Two things that have a proven record with health anxiety are CBT therapy (and you can do a lot of it without a therapist) and mindful meditation. One thing I find helpful when I want to google symptoms or think on them at length, is to look up material on health anxiety and try to make that the subject of my focus instead.

I’ve tried that with anxiety, google my symptoms then google my symptoms with anxiety, Ned to get better about that. What I do now has 70% of my brain telling me it’s probably serious and I may drop dead at any minute. And the other 30% saying “you have chronic anxiety, calm down”

 

[Fraser]

I’ve tried that with anxiety, google my symptoms then google my symptoms with anxiety, Ned to get better about that. What I do now has 70% of my brain telling me it’s probably serious and I may drop dead at any minute. And the other 30% saying “you have chronic anxiety, calm down”

Yeah, best not to google the symptoms at all! Have you tried journaling?

 

[Gooze17]

Yeah, best not to google the symptoms at all! Have you tried journaling?

I have actually, it helps sometimes and other times I can’t calm down enough to focus on it. The not knowing is probably my biggest Hang up. Wish we could just definitively know what’s going on without seeing a ton of doctors and feeling like a crazy person

 

[Fraser]

I have actually, it helps sometimes and other times I can’t calm down enough to focus on it. The not knowing is probably my biggest Hang up. Wish we could just definitively know what’s going on without seeing a ton of doctors and feeling like a crazy person

Yeah, and then the doctors being rushed or dismissive, and not trusting them, and the cycles of feeling like you're dying and then feeling embarrassed at far you blew things out of proportion, etc. It's a grind. I'm trying to get better right now. Like, I'm trying every day to get a bit better so I can get a handle on this.

 

[Fraser]

I now have an appointment with a urologist for August 10th. I'm hoping to get some clarity on all this and move forward with treatment.

 

[Gooze17]

I now have an appointment with a urologist for August 10th. I'm hoping to get some clarity on all this and move forward with treatment.

I hope it goes well and you get some answers. I have this doctor I’ve seen at urgent care, she’s really good about running tests and explaining the results step by step. She puts any fears I have to bed right away. Lemme know how it goes for you

 

[Fraser]

I hope it goes well and you get some answers. I have this doctor I’ve seen at urgent care, she’s really good about running tests and explaining the results step by step. She puts any fears I have to bed right away. Lemme know how it goes for you

Yeah, I'll post after I talk to him for sure.